Tuesday, November 19, 2013

A Tale of Two Communities

An inconsistency concerning Autism Speaks has been bothering me for a while now and, in light of the controversy surrounding the organization in the past week, I thought I might take this opportunity to write about it.

There is this idea that I have seen repeated in numerous places online that the "autism community" isn't all that fond of Autism Speaks.  Whether it is the "pro-vaccine choice" community, the "anti-cure" "just a difference" groups, the "independents" in between, or whatever group you want to talk about, everyone seems to say that they either don't like or are ambivalent about Autism Speaks.

And yet Autism Speaks is the largest and most successful autism organization in the world both in terms of influence and broad financial support.  I thought at first that this success might be due to government funding or the like.  But no, if you look at the organization's audited financial statements, you can clearly see that most of their funding comes from the walks and other retail programs.  Or, in other words, Autism Speaks enjoys broad public support.

One of these things is not like another.

Either Autism Speaks isn't being funded by the "autism community" but rather another group that cares about autism and yet isn't the "autism community", the "autism community" is not being truthful about its support for Autism Speaks, or the "autism community" that is talked about online is really only a small part of the actual community.

If you have ever been to an Autism Speaks walk, I think the answer to the inconsistency would be clear to you.  I have been to a couple of the walks and the overwhelming majority of people there were there because autism directly impacted their lives in one way or another.

Just keep that idea in mind the next time you read about how "we" the autism community like or don't like something.  The real autism community is much bigger than what you read about online.  It may not be quite as vocal as the online community but sometimes, like when it comes to supporting Autism Speaks, it can speak volumes with its actions.

9 comments:

  1. Very true. As I think I've said before, the majority of parents of a child on the autism spectrum don't read blogs on the internet as they are busy trying to fight for services and treatments for their kids. Many of the bloggers who oppose autism speaks, particularly the ASAN crowd are college students or unemployed with some time on their hands. So sampling exclusively from internet posts is not really valid. Of course if a lot of parents of children and others whose life had been impacted by autism read the blogs and knew how much money they gave Laurent Mottron and the politically outrageous things he's said and even more germane, John Robison's assertions that he knows better what's good for kids rather than their parents and decision treatments should be entirely left up to the autistic child, autism speaks would probably have been less popular.

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    1. You listed just a couple of the many reasons why I won't contribute financially to Autism Speaks and encourage others to refrain as well. Autism Speaks may do some things well but I refuse to help pay for research like Mottron's or the inane videos made by Robison's kid.

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  2. The "Walks" are a sort of release valve - they're billed as raising "awareness", not money, and it's safe to say the majority of the people involved know absolutely nothing, and could probably care less, about Autism Speaks. Come to think of it, that may be said about most of the "walks" - participants want to show support for the people with the condition, not necessarily for the organization running the show.

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    1. What you say is certainly true of the walks that I have been to or heard about. But even still, AS raises tens of millions of dollars each year from the walks and other like events. A good part of the money has to be coming from people who know something about autism and about AS.

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